Seeking advice on possible hEDS diagnosis

hi! best of luck with ur geneticist appointment :-) i’m not diagnosed w hEDS but i did go through the testing for it! my rhemy rlly suspected i had some form of EDS (she thought hEDS), geneticist thought cEDS but my genetic test came back normal with some more digging i ended up being diagnosed w an unspecified autoimmune connective tissue disorder. i have a lot of similar symptoms & co-morbidities w EDS tho ! sorry i feel like i’m rambling but ur welcome to message me if you’d like! going through the diagnostic phase can be really difficult :-(

I’m starting the genetic testing process next week. Would love to keep in touch and updated ❤️ I have pots too along with a long list of others

It took me 19 years. Pain my whole life. Wrongly diagnosed at 12. I was diagnosed by a genetics doctor. My first visit she said I did not meet criteria by one item. I had been working hard for years to get well. She ran the tesing anyway, and I was diagnosed when the testing came back a month later.